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Hard lessons: learning from the Charlie Gard case

by Dominic Wilkinson and Julian Savulescu

 

On the 24th July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion (Box 1). Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. It is expected that life support will be withdrawn in the days ahead.

Over the course of multiple hearings at different levels of the court in both London and Strasbourg, the Charlie Gard case has raised a number of vexed ethical questions (Box 2). The important role of practical ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard,1 2 but we agree on the key ethical principles as well as the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection. While the lasting ramifications of the case for medical treatment decisions in children are yet to become apparent, we here outline some of the potential lessons.Read More »Hard lessons: learning from the Charlie Gard case

In Praise of Ambivalence—“Young” Feminism, Gender Identity, and Free Speech

By Brian D. Earp (@briandavidearp)

Introduction

Alice Dreger, the historian of science, sex researcher, activist, and author of a much-discussed book of last year, has recently called attention to the loss of ambivalence as an acceptable attitude in contemporary politics and beyond. “Once upon a time,” she writes, “we were allowed to feel ambivalent about people. We were allowed to say, ‘I like what they did here, but that bit over there doesn’t thrill me so much.’ Those days are gone. Today the rule is that if someone—a scientist, a writer, a broadcaster, a politician—does one thing we don’t like, they’re dead to us.”

I’m going to suggest that this development leads to another kind of loss: the loss of our ability to work together, or better, learn from each other, despite intense disagreement over certain issues. Whether it’s because our opponent hails from a different political party, or voted differently on a key referendum, or thinks about economics or gun control or immigration or social values—or whatever—in a way we struggle to comprehend, our collective habit of shouting at each other with fingers stuffed in our ears has reached a breaking point.

It’s time to bring ambivalence back.Read More »In Praise of Ambivalence—“Young” Feminism, Gender Identity, and Free Speech

The reproducibility problem and the status of bioethics

There is a long overdue crisis of confidence in the biological and medical sciences. It would be nice – though perhaps rather ambitious – to think that it could transmute into a culture of humility.

A recent comment in Nature observes that: ‘An unpublished 2015 survey by the American Society for Cell Biology found that more than two-thirds of respondents had on at least one occasion been unable to reproduce published results. Biomedical researchers from drug companies have reported that one-quarter or fewer of high-profile papers are reproducible.’

Reproducibility of results is one of the girders underpinning conventional science. The Nature article acknowledges this: it is accompanied by a cartoon showing the crumbling edifice of ‘Robust Science.’

As the unwarranted confidence of scientists teeters and falls, what will – and what should – happen to bioethics?

Read More »The reproducibility problem and the status of bioethics

ASMR and Absurdity

by Hannah Maslen and Rebecca Roache

In the past five years or so, a new phenomenon has emerged on the internet. ASMR videos allow you to spend around 40 minutes watching someone carefully unpack and repack a box, or listen to a detailed demonstration of ten different notebooks, or observe the careful folding of several napkins. If you think this is something that almost nobody would want to do, think again: a search on the term ‘ASMR’ on YouTube returns over 1.4 million videos, the most popular of which has been viewed 11.7 million times.

What is ASMR?

Autonomous sensory meridian response, or ASMR, is the pseudo-scientific name of a phenomenon that, according to thousands of anecdotal reports, various news reports, and a recently published academic survey, loads of people experience. ASMR refers to a pleasant tingling sensation in response to certain visual and/or auditory stimuli. Common triggers include the kind of close personal attention you get when someone cuts your hair, certain sounds like tapping or brushing, and perhaps most bizarrely of all, observing someone doing something trivial very carefully and diligently.

Read More »ASMR and Absurdity

Is this really me? Parasites and other humans’ cells in our brains change our psychology

Many people are suspicious about being manipulated in their emotions, thoughts or behaviour by external influences, may those be drugs or advertising. However, it seems that – unbeknown to most of us – within our own bodies exist a considerable number of foreign entities. These entities can change our psychology to a surprisingly large degree. And they pursue their own interests – which do not necessarily coincide with ours.

Read More »Is this really me? Parasites and other humans’ cells in our brains change our psychology

Anorexia Nervosa and Deep Brain Stimulation: Philosophical Analysis of Potential Mechanisms

By Hannah Maslen, Jonathan Pugh and Julian Savulescu

 

According to the NHS, the number of hospital admissions across the UK for teenagers with eating disorders has nearly doubled in the last three years. In a previous post, we discussed some ethical issues relating to the use of deep brain stimulation (DBS) to treat anorexia nervosa (AN). Although the trials of this potential treatment are still in very early, investigational stages (and may not necessarily become an approved treatment), the invasive nature of the intervention and the vulnerability of the potential patients are such that anticipatory ethical analysis is warranted. In this post, we show how different possible mechanisms of intervention raise different questions for philosophers to address. The prospect of intervening directly in the brain prompts exploration of the relationships between a patient’s various mental phenomena, autonomy and identity.Read More »Anorexia Nervosa and Deep Brain Stimulation: Philosophical Analysis of Potential Mechanisms

‘Competitive Altruism’ – Why attractive women are the most successful fundraisers

By Nadira Faber

Why do humans help others even when it is costly and nothing is to be expected in return? This question has not only developed into a classic in different empirical disciplines, but is also of high interest for fundraisers like charities who would like to know how to increase donations.

A study recently publish in Current Biology gives interesting real-life evidence for why people help that might sound like a paradox at first: ‘competitive altruism’.

Read More »‘Competitive Altruism’ – Why attractive women are the most successful fundraisers

Press Release: The moral imperative to research editing embryos: The need to modify Nature and Science

The first study in which the DNA of human embryos was intentionally modified has been published in the journal Protein & Cell, released on Saturday. This research is significant because it may be an important step toward a world where we are free from genetic disease. However allegations that Nature and Science refused to publish this research on ethical grounds are concerning.

The Director of the Oxford Uehiro Centre for Practical Ethics Professor Julian Savulescu has called on Nature and Science to clearly explain their editorial decisions in relation this study.

“If these studies were rejected for ethical reasons we need to know what these reasons are.” Professor Savulescu said.

“There was absolutely no potential for this research to directly result in the birth of a modified human and it is unclear how the study could have harmed or wronged anyone.

Nature should explain why it deems this research ethically problematic, and yet publishes other controversial research, involving viruses, with the potential to directly kill millions of people.”Read More »Press Release: The moral imperative to research editing embryos: The need to modify Nature and Science

The moral imperative to research editing embryos: The need to modify Nature and Science

Chris Gyngell and Julian Savulescu

Human genetic modification has officially progressed from science fiction to science.  In a world first, scientists have used the gene editing technique CRISPR to modify human embryos. While the study itself marks an important milestone, the reason it is truly extraordinary is the scientific community’s reaction to it. In refusing to publish this study on ethical grounds, the world’s two leading science journals Nature and Science, appear to be demonstrating a lack of clear and consistent thinking on ethical issues.Read More »The moral imperative to research editing embryos: The need to modify Nature and Science